Hi everyone, I hope you are all doing well. I apologize I only post when I have questions. I have so much to learn. I hope I am able to offer advice as helpful as the information that I have received from all of you.

My Mom just finished her second week of radiation, and over the past couple of days she has found it painful to eat and drink (she says everything burns when she puts it in her mouth). She has pain medication, but that doesn't seem to be doing the trick. Short of getting a tube inserted, can anyone suggest something that may help make it easier to tollerate getting nutrition?

Thank you.
D

Hello, Didier. This is not what you want to hear, but if at two weeks she cannot eat/drink easily, how do you/she think she will handle the next 5? I am a strong proponent of the PEG because even after the radiation is finished, there are mouth sores that hang around. That said, there are people who did it without a PEG, and I am sure you will hear good suggestions from them. Be sure to tell your mom that there are lots and lots of people who got through what she is going through who are happy and doing just fine now. It sometimes is easy to forget because when going to radiation, all one sees is sick people.
Joanna

Hi D,
yeah I'm one of those guys who didn't get the PEG tube but that doesn't mean I don't recommend it. I think most people on this site SHOULD get a PEG tube. I would talk to the doctor immediately about all of her pain management options. Don't delay. Dehydration can set in very fast.

My radiation effects continued for a good three weeks post treatment and got worse to boot. You must take that into consideration also. I could tell you all of the meds I took but everyone is a little different and the doctors have an ethical responsibility to manage it.

After reading all the pros and cons of the peg tube I asked for one prior to my surgery. The reasons vary but I felt all the warnings about not being able to eat or drink in the quanity I would need was the biggest one. Also I am a small man 5,7", 145 normally. I couldn't afford to lose much weight, I relied on the experience of those who walked this path before me.

You have perhaps read that I did not need a PEG. I did have significant pain and it seemed worst at about the second or third week. The radiation also takes away the urge to eat to some extent and distorts the sense of taste. This is in addition to the pain. I lost 30 pounds and I was not overweight when I started.

My suggestion is that anyone going through radiation needs to be really determined to eat and drink as much as possible, at every moment think about eating and drinking. If at any time you physically cannot eat or drink or mentally can't get up to it, then it is time to get help.

Frankly the pain meds given me to help with eating didn't work very well. She should avoid salty, peppery, or pickled foods. Also tomato based food was tough for me. I had to use a blender to make everything liquid. I have not found any food that can't be chewed up by a blender. Eating became an almost around the clock thing. It would take a long time to eat anything but I did it.

E-mail me if you want some blender ideas.

Take care

My husband used xylocaine viscous every time he drank anything and still does since april it gets pricey but he refused to get a tube
hope something works for your mom Diane

Thanks for the info. I am pushing for the PEG as she really hasn't been eating for the last two days, and she hasn't eaten anything so far today.
Argh. To add to the frustration, my siblings carry on with their lives as if my Mom isn't even sick. One of my brothers hasn't even called her all week and the other is more concerned about his social life. Thank God for this forum. Without it I wouldn't have much support. Thanks everyone. Sorry for venting.

D,
I'll add a few things to Mark's list that I couldn't eat. Any fruit - not even cantelope, fruit juices unless extremely diluted (because of the acidity). Mark was absolutely right about having to making eating and drinking a highly focused priority (An extreme challenge when one is sick as a dog from combination radiation and chemotherapy). I never realized just how hard it was to take in JUST the 2-3 liters of water a day to avoid dehydration (Did I mention that I had to be rehydrated twice in the hospital - once in emergency) when you can only take small sips (that's a LOT of small sips), let alone all of the calories required. That's about 4-6 cans of Boost or Insure every day (I couldn't stand either one of those so I lived on Carnation Instant Breakfast and coffee flavored milkshakes - strangely enough it was the ONLY taste bud that still worked). All the while in pain, fatigued, sleeping all the time, none to horrible taste, mucositus, etc. I never got to the point of even trying blended drinks because I struggled so much with just the Carnation Instant Breakfast. We were given a brand new blender and it still sits unused. It's only through the natural will to survive and the grace of God that I got through it.

I am smaller than Dan, 5'6", was a little heavier going into it, about 170 (and in great shape going into this) and got down to 109 lbs (I can't even REMEMBER when I weighed 109 -4th grade maybe? I would look in the mirror and see someone who looks like a Nazi death camp survivor). I am still wearing some of my wife's jeans and she is a size "0". My t-shirt size has gone from large to small -Hey Brian can I trade some of my t-shirts (just kidding, I plan on growing back into them).

Almost 5 months post radiation, putting the weight back on has been very challenging, and I suspect that my consistently low WBC is a result of poor nutrition. And my appetite, taste buds and swallowing are great now.

There were times it would take an hour or more just to get up the courage to swallow the pain pills (little tiny morphine pills) for the breakthrough pain involved in swallowing (now there's a paradox).

The "pink magic -topical lidocaine & morphine" would make me vomit most of the time (but I would still get about 10-15 minutes of "swallowing time").

Thrush was also a major problem for me and greatly exacerbated any and all swallowing issues and pain. I still take a maintenance dose of Diflucan.

There were a few times that I actually thought I would die. Would I get a PEG tube knowing what I know now? You bet (grin -for you Joanna ;-). It would have made my management (yes I needed to be "managed" - I can admit that now) a lot easier on my long suffering wife, my only caregiver.

I think the PEG tube just takes some pressure off. My husband resisted until the last two weeks of radiation/chemo. He is 6'2" and got down to 115 lbs, even though he was eating as much as he could round the clock - getting up in the middle of the night and making milkshakes, etc. He just had his PEG tube taken out a couple of days ago (at about 4 1/2 months post treatment). There is so much to deal with during and after radiation that anything to make things easier is worth it. I have to admit that I became the "diet police" even when he was on the PEG...he needed alot of urging to get enough calories.

Anita

Anita, your "diet police" reference made me laugh out loud. That is the hat my husband wore because I simply didn't care if I ate or not. He would plug food into my PEG while I slept.

Others have mentioned it, Didier, but we patients can often come to just not care about eating, which is bad, bad, bad. Even worse is when we don't get enough water, which is much more than a couple of sips a day. Dehydration is very serious and can come on suddenly. And about your siblings, it may be that they cannot mentally and emotionally acknowledge that their (your) mom is not always going to be there. It is more than wonderful that you are available to help and worry about your mother. Vent away, as we all understand the stresses that a serious illness brings.
Joanna

Hi and sorry to hear about your mother's experience. My father completed radiation therapy in May (35 treatments) for tonsil cancer and opted not to have the feeding tube. He is still unable to eat, due to throat pain and the horrible "metalic" taste that is present. He is currently trying to force down 4 Scandishakes ( a high calorie shake mix) a day --mixed with whole milk and ice cream. These take him a good hour to get down. He is also able to manage some broth. He has lost 30 some pounds to date and cannot stand to lose any more. He turned 71 last week.
Looking back to pre-radiation treatment, he had the option to have a tube placed, but chose not to , thinking that the side effects would lessen after completion. But unfortunately, they are still affecting him and he is miserable. He has a doctor's appt. this Tues. and they may recommend a tube, and he will probably go thru with it.

My advice is to discuss the option again with your mother. Things are going to get worse for her, before they turn around. It has been a horrible 4 months for my dad. I only wish we could have seen in the future, and maybe he would have opted for the tube at the get go! Prayers to you and your mother!

Didier,
I know how your Mom is feeling. I too was unable to eat due to intense pain in my mouth and throat at about week 3 of radiation. If it had not been for the lidocaine, I would have starved. I would hold it in my mouth for as long as I could (5-10 minutes) and then spit it out and drink an Ensure or two. It was not ideal, but that was my ONLY option and even then it was a struggle to force myself to do. If it wasn't for my husband constantly reminding me that I needed to look after myself and go on for him and my kids (5 & 13 at the time), I would have just not bothered. It lasted about 2 more months after my radiation treatments were over but it was all worth it. I have only read about the PEG tube on this forum, wish I had known or had the option. I am going for round 2 of surgery soon, no radiation this time but of course since I am losing another chunk of my tongue, I'm concerned about how much I will be able to chew and swallow this time (I'm kinda sick of the taste of Ensure after a diet of it for almost 5 months even if it was 2.5 years ago!)and wonder if a PEG tube would be something I should ask my Dr about for this. As some others mentioned, the need for nutrition and hydration is SO important for her right now. Good luck, my thoughts and prayers are with you.

Gail

Didier,

I cannot imagine how I would have made it this far without a PEG tube. My doctors recommended one from the start and I'm glad I did. I had 4 weeks of chemo and 35 radiation to the neck. I lost 50 pounds. I went 8 or 9 weeks without eating anything. I couldn't even swallow water my tongue and throat were so sore and swollen. Ensure Plus 300 calories a can 9 a day put 15 pounds back on plus I was able to keep hydrated with the tube. I would suggest if possible to get a tube it is much easier. I can now eat a small amount but it takes a long time to chew long enough to swallow don't be in a hurry.

Good Luck

Thanks everyone for your support. After spending last night in the ER due to dehydration, nausea, excruciating oral and neck pain, etc., I was able to talk her into getting a tube which is scheduled to be inserted this Thursday. She hasn't been able to eat solid food for about a week and hasn't been able to drink water or Boost due to the immense pain. Lidocaine and Morophine aren't doing the magic I wish it would, and continuous weight loss is yet another huge concern I have, so I am grateful that she has agreed to go ahead with the tube. Emotionally she is breaking down due to the pain, nausea and vomiting so I as scrambling to find the right meds that work best to manage all of this unpleasantness. I see what this is doing to her, and it's kicking the hell out of me not being able to kick this things ass. Its been a long day. I just got home from spending about 15 hours at the hospital and I don't know what I accomplished. I hate this feeling.

Oh Didier, I know you are in a tough spot right now, but know it will get better. What you accomplished is to take care of your mother when she is unable to help herself, and that is no small thing. It is going to be a while yet until everything is easy, so please, please don't be hard on yourself. You are a good person doing an important and tough job. I cannot really see into the future, but based on my experience and that of many people on this forum, I am pretty sure that when your mother has the PEG and has become comfortable with it, your life and hers will suddenly be a lot better. So as trite as it sounds, hang in there!
Joanna